Dealing with the REM Sleep Behavior Disorder Sandman
“Good morning, Sunshine!” is the kind of thing we are used to hearing when we wake up. I have heard variations of this when my nana would sing, “Have you ever seen a dream walking?” at my much younger, childhood self. “How did you sleep last night?” is another common question people are asked. With Parkinson’s, the answer is generally pretty standard for me and many other Parkies: I slept lousy as I wrestled through the night...again.
Journeys into combat
Last night, a Thursday, I fell into dreams fairly quickly, like I normally do. However, this week’s dreams have been fairly extreme, though still retaining their surreal quality. The one last night was a trip to Mulafossur Waterfall in Gasadalur, a small town in the Faroe Islands. Unlike the volcanic planet of Mustafar, which the name might remind some of us of, the Faroes are an isolated archipelago between Iceland and the northern Scottish Islands (the Orkneys and Shetlands). It is a very important part of my proposed British Isles trip, but it is not something I think about often since it is expensive and requires a lot of time off.
Nevertheless, last night my unconscious mind was taking off. I was trying to climb into a position that would give me a good view of the top of the ocean-side waterfall. In the dream, I was in a rocky crag that led to a pool that was difficult to get across. It does not exist in real life, but in the dream it did. Somehow I got up it, but didn’t go where I wanted to go. Instead, I ended up at a National Park System visitor center. The ranger told my dad and me that nobody can do this. Once again, that place does not exist either, but then again neither did the swimming pool type area I moved to. When I got there, someone was trying to drown me. I broke loose from his grip and retaliated in kind, pushing his head under the water.
That was when my hand moved, in real life, quickly grabbing him and forcing him under since I could not flip him over me. Instead of finding flesh and blood, my hand slammed into my pillow kingdom. Turns out I use 4 regular and 2 oversized pillows for a reason.
Previous nocturnal fights
In another fight the previous Saturday, I punched someone who was bullying me, and then I jumped back when he lunged for me in a startled reaction. A few weeks ago, I kicked at someone who was coming to get me. Mind you, I don’t live my reality in fear. I have a nice row home in a calm part of a small town. Still, I am finding myself in active “combat” regularly in my dreams.
Causes of real life dream actions
Prior to that, I had 2 chaotic punch dreams. In one, I punched twice when people attacked my wife and me in a store. Another dream had me in the Holocaust, where I punched once. I attributed this to “Wild Side,” which is a pseudonym for a dopamine agonist I was on. It’s also a Motley Crue song (hence the name), but that’s neither here nor there.
Note, I do not want to turn people off to medicines that work, but some have side effects to consider in small or notable populations. This one, as some dopamine agonists may do, had the ability to produce those effects after months of no side effects. For me, I stopped it when I fell asleep mid-conversation. My medicine that works now produces livedo reticularis, which is a rash that isn’t harmful as a side effect. It just looks like spider webs.
Because the medication works otherwise, I stick with it.
Discussions with doctors
Recently, I went to my sleep doctor and he talked to me about my REM sleep behavior disorder, which has nothing to do with the band REM singing about dreams.
I think I am a “curious” diversion to my doctors since I am “animated,” researched in that “University of Google” kind of way, and into what they say. Anyway, I was at least open and positive in my willingness to converse with my doctor about my symptoms.
Medicine to control my REM sleep behavior disorder
He offered me Clonazepam. This pill does sedate the person who takes it, but like many medicines, it has side effects. At this point in my life, I cannot risk those. I would rather work while I can and use my given days off for things that I cannot control. After having my body reject 3 different tremor medicines, I can postpone another one when nobody is at risk.
Fortunately, my wife moved to a different room before the punching began. She left when I was just moving around and “scratching” myself and her. IMPORTANT NOTE: I would never do anything to hurt my wife, but the REM Sleep Behavior Sandman doesn’t care what we think. He just does whatever he feels like. That’s why this topic is so important to be aware of.
Bad trades are part of Parkinson's
You may lose sound asleep snuggling time, but that’s a trade you can live with when you move to a separate bed to protect the people you love. As for me, I can now sleep in my own room. This lets me stay up late to read and not wake my wife up if I talk / yell in my sleep.
And yes, I do sleep talk. I haven’t fallen out of bed yet. Should that happen, I will reconsider a Clonazepam attempt immediately.
Other sleep issues with Parkinson's
In comparison, throwing pillows and stripping off pillowcases is pretty calm. I’m not sure what those dreams were that caused them, but yeah. It’s real, as is the sweating nastiness I feel quickly, even on cooler night. That’s from hyperhidrosis. And yes, secret time, it is why I am glad I can rotate and flip my 6 pillows to get out of the lake every time I am waking up to go to the bathroom, multiple times at night.
It sure beats waking up to strange sounds that do not exist anywhere other than in my startling dreams. Just like the “earthquake” I thought I woke up to while on Wild Side, the surreal nature of the dreaming mind creates whole new scary worlds when we wake up in the drowsiness of the reality of where we are now. That earthquake felt like it was really shaking the house. The sounds of crashing above me, in the attic, sound real, too.
I push them away, as I do the really bad dreams, with the words that this isn’t real.
What's real and what's a dream?
However, sometimes the surreal can feel real, and we have to say, “Hmm.” I know that is how I felt when I had a wide-awake sensation (while on Wild Side) that I had to visit my gram’s grave for her birthday to tell her about the new additions to the family (my sister’s husband, his two kids, their son, and my wife). It turned out that day was her 100th birthday.
Personally, I would rather believe that was her being my guardian angel since I was her sidekick. I would definitely rather believe in our union of family and neurological issues (she had Alzheimer’s disease) than a medical side effect. Over 25 years since her passing, I would just rather believe in love than hallucinatory ghosts.
As for earthquakes, they can just remain side effects, though they really do happen in Pennsylvania.
Do you think there is enough awareness of Parkinson's disease?